H 1189 Massachusetts House · 194th Legislature (2025-2026)

An Act providing insurance coverage for Alfi’s syndrome

This bill requires health insurance plans to cover diagnosis and treatment for Alfi's syndrome (a genetic condition also known as 9p deletion syndrome) on the same terms as coverage for physical conditions. It mandates no annual or lifetime dollar limits for this care, prohibits restrictions on the number of visits to Alfi's syndrome providers, and requires coverage for specified services including habilitative/rehabilitative care, pharmacy care, psychiatric care, psychological care, and therapeutic care. The law applies to all health plans offered through the state group insurance commission and ensures coverage isn't subject to lower limits than those for physical health conditions. It does not affect existing benefits or school-based services provided under individualized education plans.
Sub-Topics: Insurance
Bill status passed 3 of 4 stages cleared
Introduction
Feb 2025
Committee Review
Feb 2025
Senate Passage
Feb 2025
Governor
Introduced Feb 27, 2025 Last action Feb 5, 2026
Floor votes

How they voted

This bill passed the Senate. No roll call record of that vote is available.
Full legislative history

Actions timeline

Total actions
4
Key actions
1
Committee
1
Feb 27, 2025
Upper · Passed
Senate concurred
upper
Feb 27, 2025
Committee
Referred to the committee on Financial Services
lower
1 primary · 0 co-sponsors

Sponsors

Role
Legislator
Party
State
District
P
Photo of Natalie Higgins
Natalie Higgins
DDemocratic
MA
4th Worcester